IT’S COLD OUTSIDE AND A SMALL SUCCESS

BRRRR it is cold out there today. I even saw a few flakes of snow coming down along with plenty of hail and rain. On the hills over the other side of Belfast Lough there is a dusting of the old white stuff. Its an Arctic wind apparently, but I dont really care where the wind comes from all I know is that it would freeze the balls off a brass monkey.

I was talking with a friend today and I realised I had forgotten to post some news I had. We have had a small development or should I say success for us as a family, a step which should pave the way for other families in our shoes too. I finally managed to get Sol’s patches paid for by the NHS. After being allergic to the ones the hospital provided I was left to source different ones and pay for them myself. It is not the money that got me, but the difficulty in obtaining these patches which are latex and rubber free. Each three months it was the same trouble – pharmacist saying supplier doesn’t do them, me saying they do, me speaking to supplier, persuading someone to order them in from manufacturer …blah blah, and it was the same every single time. The patches cost £12 per box for me, apparently they would cost the hospital £7.50, my daughter was turned down this inexpensive yet very effective method of treatment based on cost. I complained every time I went to the hospital, and the answer I had got last time was “try source them cheaper on the Internet”. The hospital would not even supply these patches for Summer – even passing the cost onto ourselves would have been preferable to the trouble each time I wanted to order.

So in the end I spoke to the manufacturer and they went into a little rant as to why other children get free patches why not us – he named hospitals that supplied the patches for free and one of those was also in the Belfast area. So I went back and informed the neurosurgeon’s secretary and the orthoptics department that I was going to our local parliament member about our child with low vision being denied treatment. Before I knew it these guys were ringing me back saying this and that – talking of making preliminary enquiries of costing. Then came the call that Sol has been given authorisation to get her patches on the NHS but still not other children (it is a start). then the manufacturer called me congratulating me for ‘paving the way for other families’. The manufacturer had received a fax through from the hospital that very day pricing up the patches for Summer.I paid for this three months supply, but after those patches run out hopefully things will be set in place for Sol to get hers at the hospital at no additional cost to ourselves.